Brand new diagnosis- 10 yr old daughter. I'm lost!

Hello all,
My daughter was diagnosed 1 week ago. I took her to her pediatrician for weight loss. That was the only symptom. She had lost 10 pounds since January. She is 5' tall and in January was 100 pounds. She was down to 90 pounds and we decided to do blood work. I had discussed her weight loss previously with her doctor and we were just watching it because at 100 pounds she could stand to loose a few and we thought it was likely her loosing her "baby fat" due to the onset of puberty. The pediatrician thought it was likely her thyroid but I asked to have a glucose drawn and before we even got home she was calling to say to go to the ER because her blood sugar was 480. We stayed 2 nights. She had some odd things that don't add up. No keystones in her urine and not in ketoacidosis. Has never felt bad, not fatigued, no other symptoms, other than, in hindsight, more thirst and urination. Her antibodies came back negative and her cholesterol was normal. We want home on insulin injections and have lowered the dose once due to very normal to low normal blood sugars but now we are consistently low. I have a call into the on call MD but he has yet to call back. I'm very new at this but i thought I would start here and ask if anyone else had a child with negative antibodies and if so, did you ever get an answer as to why they are negative and did that change your plan of care if diagnosis?

My son was diagnosed with no antibodies. For months, I kept hoping that it meant he didn't really have diabetes or that it was possibly MODY. Neither was true. I've never heard it mentioned here or by a doctor, but I've had another parent tell me, "Oh, so he's type 1b?" so I've looked it up. Seems to be a label used when there isn't a known cause. To me, it just means that there are more antibodies waiting to be discovered.

My son did have a pretty decent honeymoon with less insulin needed and steadier numbers. It's been almost two years now and he is still relatively easy to manage. My daughter is really focused, treats highs and lows, follows all of "the rules" about diabetes management and takes about 8 times the work as my son. He forgets to bolus, rarely predoses, ignores alarms and has beautifully steady lines. His 90 day BG average on his Dexcom is 117 and he is only low 4% of the time. He rarely goes over 300. If he was my only kid with diabetes, I would think I was the most awesome pancreas in the world. I don't know if 1b is even a real label - it's on my list of questions for our endo at the next appointment - but if it is and a sign is easier to manage BGs, then I'm a believer.

Which Dr are you calling and not getting a response? That shouldn't be. Your daughter should have been discharged with a connection to a pediatric endo practice and they should be assisting you during these first few weeks (months) to adjust dosage.

I'm very new at this but i thought I would start here and ask if anyone else had a child with negative antibodies and if so, did you ever get an answer as to why they are negative and did that change your plan of care if diagnosis?

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Two things to think about:

1. Testing for antibodies when type-1 is first diagnosed is quite recent. When my daughter was diagnosed (about 10 years ago), those tests just weren't run.

2. Testing for antibodies is not the same testing for type-1. Right now, we know about five different auto-antibodies associated with type-1 diabetes. My guess is that your child was tested for 4 of those antibodies, and did not have any of them. The fifth is fairly new, and I don't know if it is has been added to the standard "panel" of type-1 autoantibody tests as yet. Plus, there are 2 or 3 more auto-antibodies which are suspected of being associated with type-1 diabetes, but which are still being researched.

So, in answer to your questions:
* Right now, there is no difference in treatment depending on how many auto-antibodies you have when type-1 is diagnosed. As far as I know, there has not been any research into this question, and no reason to believe that type-1 diabetes progresses differently or should be treated differently, based on number of detected autoantibodies.
* Some number of type-1 diabetics never test positive to any autoantibodies. This is rare, but normal, situation (so far as we know) for type-1 diabetics.
* The simplest and most common answer to the "why no autoantibodies" question that you ask, is this: there are autoantibodies but they are of types that we do not test for or do not know about, so we don't see them in tests. But it also may be that some people just don't get them. Or, it maybe something else entirely.

Your daughters diagnosis sounds similar to my sons. I only took him in because of weight loss. Looking back there was increased thirst, but it was an extremely hot summer, so I hadn't noticed that. He didn't have ketones at diagnosis either. As for antibodies, he wasn't tested for those, so I don't know. He didn't have a honeymoon that I can tell, though. His ten year diaversary is in January.

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